Development of a self-management mobile app for bereaved adolescents: evaluating patient and public involvement.

Background: Losing a family member during childhood is a potentially traumatic event and increases the risk of mental health difficulties. Adolescents have the right to express their views in research of relevance to them, but few studies have involved bereaved adolescents as collaborators (i.e. Patient and Public Involvement (PPI)). Furthermore, to ensure meaningful and non-tokenistic involvement, bereaved adolescents' levels of participation and experiences of taking part in research need to be evaluated.Objectives: The aim was to describe and evaluate a PPI process working with bereaved adolescents to develop a self-management mobile app for adolescents in grief.Methods: The PPI process consisted of four workshops during which the app's logo, colours, name, content, and layout were discussed with six parentally bereaved adolescents aged 13-18 years. The adolescents were recruited through a non-profit organisation providing support for adolescents in grief. The PPI process was documented and evaluated using participant observations and an online survey completed by the adolescents, covering the themes of social context, participation, and influence.Results: The adolescents perceived the social context as comfortable and inclusive, where their knowledge was valued. Their participation was characterised by ownership and motivated by a desire to help others with similar experiences. The adolescents' ability to participate in PPI activities was assisted by the researchers' flexibility, although challenging assignments may have made participation harder. Throughout PPI activities, adolescents contributed with relevant input and reported feeling influential. The study reached the intended levels of participation and appeared to adequately fulfil the adolescents' right to participation.Conclusions: Engaging adolescents who have undergone a potentially traumatic event, such as the loss of a family member, in research can enhance the overall relevance of the study. Moreover, it can entail a meaningful and positive experience for the participating adolescents, while also fulfilling their fundamental right to participation.

A collaborative process with parentally bereaved adolescents to develop a psychosocial self-management mobile app for adolescents in grief was described and evaluated.Adolescents made significant contributions, took ownership, and experienced having influence over the decisions made, which increased the relevance of the intervention.The collaborative process reached the intended level of participation and created a positive and meaningful experience for the adolescents.

Death and grief in illustrated storybooks: an inventory of Swedish literature for young children.

Storybooks play a crucial role in the experience of childhood. As death is an inevitable part of life, storybooks can be a helpful tool to start communicating about death and grief. The aim of this study was to learn which storybooks were available regarding death and grief for Swedish-speaking children. During spring 2023, a literature search was conducted. A total of 62 books were included in the content analysis to assess language, words, symbolism, and coping strategies. This study provides valuable insights for adults, aiming to enrich the literary experiences of children and promote meaningful conversations about death and grief.

The self-help app My Grief: Bereaved parents' experiences of helpfulness, satisfaction and usability.

Mobile health (mHealth) apps have been shown to be useful to monitor and reduce mental health problems across a variety of stress-related and affective disorders, yet research on the value of apps for prolonged grief is scarce. Therefore, the main aim of this study was to elucidate bereaved parents' experiences of using the self-help app My Grief with a focus on helpfulness, satisfaction, and usability. Data were derived from closed-ended and open-ended questions administered at the 3-month post-assessment of the intervention group (n = 67) within a randomized controlled trial testing the effects of access to the My Grief app. The sample consisted of 88 % women, with a mean age of 47 years, who predominantly lost their child to cancer (41 %), on average 4.8 years ago. Participating parents indicated that the My Grief app helped them increase their knowledge about prolonged grief and track their grief over time. The app was experienced as easy to navigate and around half of the parents used the app more than one day a week. Almost all parents were satisfied with the app and would recommend it to other parents in similar situations. The findings add to the knowledge base justifying mHealth within support systems for bereaved adults.

Surviving COVID-19: patients' experiences of care and path to recovery.

PURPOSE: To examine patients' experiences of receiving care on an ICU for COVID-19 and the subsequent rehabilitation process. METHODS: An explorative and inductive design was used. Participants were recruited from two university hospitals in Sweden. Patients admitted to the ICU due to COVID-19 from March 2020 to April 2021, who enrolled in the ICU follow-up, and understood and spoke Swedish were invited to participate. In total, 20 participants completed a semi-structured interview, of whom 18 were included in the thematic analysis. RESULTS: The analysis resulted in two themes: "An isolated world with silver linings" and "Recovery in the wake of the pandemic". Findings show that patients cared for on an ICU for COVID-19 during the pandemic felt safe but experienced a sense of vulnerability. After discharge, physical rehabilitation was a slow process with frustrating day-to-day fluctuations. Mentally, participants felt isolated, fatigued, and emotionally sensitive. Patients reported that love and support from family and friends were crucial for the recovery process. CONCLUSIONS: This study highlights the challenges of recovering from COVID-19, emphasizing the importance of continued support from health care, public services, family and friends. It provides important insights into patients' experiences and can inform future healthcare strategies and policies.